Health Organization for Pudendal Education

hi, from pdn; have had pudendal neuralgia probably for 10 years or so possibly from a lot of sitting but must be more to it than that. Anyway, have had several injections from dr. Quesada, in new hampshire, without much help, Can't tolerate much pain meds but probably do get some help from 10 mg. of nortryptiline. Have tried all the alternative treatments and pelvic floor therapies without much help either. Dr Valovska, at Brigham hospital in boston area, is recommending a stimulator trial. Wondering what anyone thinks or knows about this treatment?? thanks, pdn

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Joined: Tue May 03, 2011 9:16 pm
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Pdn

I have had a Stimulator for PN pain for nearly four years now, it is not a miracle but it does help me a lot, if you want to read about my experiences go to the Neurostimulator section of this forum and read all about the limitations of this therapy.......I had given up on on life prior to having a stimulator and now i can live a life again.....its not great but a huge improvement.

Hi pdn,
Dr. Volovska is my doctor also and I feel very lucky for that cuz unlike my former dr., she is willing to try and explore different things. She really wants to help me get out of the pain and she is deeply compassionate. She mentioned the possibility of getting the implant to me as well, but a bit later down the road. I would really appreciate hearing how your trial went. I also wanted to share with you that I facilitate a support group in Newton. We meet once a month. I also facilitate shorter term art/drama therapy workshops. All is free. Stay well and best of luck to you.
Atara

Having a Stimulator is a final decision and there are many other pain treatments to try before you go down this road, it does have life changing effects which ahve to be taken into consideration and depending on your medical history there are many investigative treatments that are forbidden for life so you need to think carefully about this.
Even though I have a Stimulator every time I go to a physio appointment I still encounter many therapies that I cannot have because of the stimulator....so its a huge decision. Please read the threads in the Neurostimulation section for further details.

What does it feel like does it feel like a tens unit that u cant shut off??

It is very hard to describe how a stimulator feels, it is like a very gentle tens however if you feel it too much it aggravates things and overstimulates the area.
The only time I feel overstimulation is when I am on the wrong setting for my activity.
I have three programmes which are preset, when I stand, lie or sit the levels of stimulation are totally different, so if I stand on a sitting programme it aggravates certain areas so much that I know im not feeling too good.
When i used a tens machine I had it turned up very high but with a stimulator the levels are very low for me....hopefully it means that my battery life will be as the manufacturers recommend will be for about 7 years, i am four years into mine and hope that no further surgery is needed for a few years, I am returning to Belgium soon for a review of my battery and stimulator useage.
While there are life changing limitations i would not like to be without my stim...it is indeed my best friend.
A friend who hadnt seen me for a few years commented recently at how well I looked, for once we had a long conversation that didnt involve me sitting on the toilet every few minutes; my hydration levels are normal now whereas years ago i was always totally dehydrated because of constant urinating due to an overactive bladder.